Ben's Friends: Patient Communities for People with Rare Diseases National Library of Medicine - National Institutes of Health BIOMED Central GRACE » Howard (Jack) West Howard (Jack) West, MDMedical Director, Thoracic Oncology ProgramSwedish Cancer InstituteSeattle, Washington, USAPresident & CEO, Global Resource for Advancing Cancer Education (GRACE) Dr. Jack West is a medical oncologist and Medical Director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Washington. He also serves as President of the medical education website OncTalk, LLC and the Global Resource for Advancing Cancer Education (GRACE). Dr. Dr. Conflicts of Interest President and Founder of OncTalk, LLC (intellectual property transferred to GRACE)Consultant – AstraZeneca, Eli Lilly, Genentech, GenMab, OSI Pharmaceuticals sanofi-aventis; Center for Biomedical Continuing EducationSpeakers Bureau – Eli Lilly, Genentech
About Porphyria | American Porphyria Foundation Click on the bold blue text below or on a topic listed on the left side of the page to read more. Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of porphyrins or porphyrin precursors. The terms porphyrin and porphyria are derived from the Greek word porphyrus, meaning purple. The symptoms and treatment vary significantly from one type of Porphyria to the next. Porphyria symptoms arise mostly from effects on either the nervous system or the skin. The porphyrias are rare diseases. EPP is the most common porphyria in childhood, and the one associated with the longest delays in diagnosis. This section of our website includes basic information about symptoms, diagnosis and treatment of the eight types of Porphyria. Please see the Testing for Porphyria, Treatment Options and Healthcare Professionals sections of our website for more detailed information.
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